The difference of a diagnosis: the before and after impact of marginalisation on my UX career

This is the transcript of the talk I gave at AlterConf Melbourne 2017 on 23 September 2017. TRIGGER WARNINGS: Ableism, Bullying, Depression and Suicide. Views are my own.

My name is Ashlea McKay. I’m a User Experience researcher and writer. I’m also autistic. I was born with a different brain but I didn’t find out until I was nearly 30.

Learning about my neurodiversity 5 years into my career had a big impact- for better and for worse. For me, marginalisation has existed on both sides of the diagnosis fence but in different ways.

I also want to be clear that when I say ‘career’ I’m not just talking about a job. I consider my career to include: university, all the different roles I’ve held, volunteer work, my online self-advocacy publications, the small business that I own, my blogging activities, my speaking engagements and much, much more. Many of these hats have been worn simultaneously.

Today, as I celebrate my 31st birthday, I would like to share some stories and explore the difference of a diagnosis with you.

Some of what I’m about to share might be hard to hear. But it’s a difficult conversation that needs to be had and I hope you’ll see the positive side and join me as we work towards designing a more inclusive future.

Pre Diagnosis stories

Pre diagnosis life was harder than it needed to be. I’ve always known there was something different about me. Interacting with other people has always been really hard. Statues are much easier to talk to.

Prior to getting diagnosed, I was bullied. A lot.

I’ve been called harsh, rude, inappropriate, offensive and a bad person. A monster. For a really long time I believed that was true.

I was 6 years old the first time I saw a therapist

I was 12 when I first started showing signs of depression

And I was 15 the first time I tried to take my own life.

Since we’re here to talk about my career, we’ll start with university.

I didn’t have any real friends at uni.

My peers would sit around and discuss the evidence they had to prove how much of a bad person I am. They did this right in front of me like I wasn’t even there. They would refuse to sit with me in class and at lunch- they said I was “not normal” and “too weird”.

When I was nominated for an award, they told me that I didn’t deserve it. They said I had ‘taken’ it from someone else. They also said the only reason I was nominated in the first place was because someone believed in gender equality.

The teachers weren’t that much better. I once appealed a grade that I felt was unfair and was rewarded with an audio recording of an 8 minute rant about how stupid I was to think that I was worth more.

When I started working, I thought things would be different. But I struggled to connect with my colleagues.

In my first few years of working: I discovered how it feels to be turned away from meetings, I learned the sting of comments made to make me feel small, and I endured the discomfort of exclusionary bullying.

I developed a reputation for being difficult to work with quite early on in my career. That broke my heart. My work is everything to me.

I’ve been sent to EQ training where I failed every exercise and walked away even more confused.

I once got banned from conducting user research (which was my role at the time BTW). I’d done it 1000 times before but someone decided I couldn’t be trusted to speak to members of the public.

I once worked on big, high profile project where the only feedback I got at the end was this: Ashlea worked on her social skills. I can’t tell you how sickening that felt. I felt like I’d been punched.

In April last year I decided I needed answers. After 17 years battling depression, enough was enough. I eventually reached a point where I was at peace with my differences and I needed to know why they were there. I was assessed and diagnosed as autistic.

Post Diagnosis stories

When I first got diagnosed, I went through a rollercoaster of emotions: sadness at being diagnosed late, anger at being diagnosed late and relief at simply being diagnosed.

The initial reactions I got from other people covered a spectrum broader than the spectrum itself. I was congratulated by my friends, pitied by my family, belittled by random strangers and was offered unconditional support from my amazing colleagues.

There were people who told me to be careful about who I told. Don’t put it on social media and never ever tell a prospective employer until after they’ve hired you. I learned early on that disability stigma stinks like shame and doesn’t come out in the wash.

I’ve also learned that people often perceive a hierarchy of disability types and will sometimes view some disabilities as more worthy of acceptance than others. I’ve interacted with people who think it’s perfectly fine to tell me to ‘fix’ my autistic traits but when called out on it, don’t seem to understand that this is not even remotely ok.

When you have an invisible disability, it’s taken like you’re lacking a skill. There’s always a lingering expectation that you will change. I wouldn’t have a permanent lifelong disability if I could! And when I communicate that — when I OWN my differences- I come under fire for promoting mediocrity or undermining those who have ‘learned’ to evolve.

Pre-diagnosis, I never thought I’d be in a position where everything I say regarding my own brain is taken as less than truthful. I didn’t know that getting diagnosed was only the first step and that it would be my job to not only educate everyone from the next door neighbor’s friend to airline carriers, but do so in the face of constant disbelief.

I also never thought I’d encounter complete strangers who think it’s ok to tell me what my needs are as an autistic person or worse have conversations about those needs without including me. Nobody speaks for me.

My advocacy work has largely been met with support but there’s a dark side too. I’ve been told that I’ve got nothing to add because I’m less accomplished than other autistic adults. I’ve received hate mail in both my personal inbox and my actual mailbox. I’ve been called pointless and overly emotional. I’ve been told that I’m a horrible person who shouldn’t have kids in case they turn out just like me.

Some thoughts

Pre-diagnosis, I was a rude, inappropriate, monster that no one wanted to invite to dinner.

Post diagnosis, I became an inconvenient, lying, less evolved blocker to change who shouldn’t have kids.

The post diagnosis experiences have really surprised me.

The most mindblowing thing of all is, pre or post diagnosis, I’m still me. I didn’t get a new brain in April last year. I got context about how my brain works and found the final piece of my identity. Mine. This is all mine.

Context is a powerful thing. I discovered that my view of myself was not only wrong but also incomplete. I didn’t have the whole picture or the right frame of reference. That context is also all mine. It’s not a tool for other people to frame their disdain.

It has not been easy.

I do have days where it all drags me down to the depths of depression. Sometimes I regret getting diagnosed. Like it was easier to just stay in the dark and be a monster.

But at the end of the day, none of that takes away from the fact that getting assessed and diagnosed was the best thing that ever happened to me. Sure it turned my world upside down, but the bad stuff has also been offset by some very positive post diagnosis experiences.

I’ve been fortunate enough to know and interact with some very supportive and caring people. The unconditional and unwavering support and kindness I’ve been shown has taught me how to trust again.

My relationship with my parents has never been better.

Everything I’ve been through has made me tougher. I actively participate in four diversity committees and I lead two of them. I write, I speak and I am never going to stop challenging this neurotypical world.

I’ve learned that when people do and say these awful things, sometimes it’s because they feel threatened.

They feel threatened because they can’t always connect with the idea of autistic people owning their differences.

It challenges their thinking in ways they might not open to.

My self-acceptance isn’t a threat- it’s not even about anyone but me. It’s mine because my autism sits at the very core of my identity. It’s not an affliction and it’s certainly not something I lug around with me in my purse.

When I discovered identity first language, I felt liberated. I do use the terms Asperger’s, Aspie and Autistic interchangeably and that’s my choice and I own it. I’m an autistic person not a person with autism.

While the bullying and the ignorance is incredibly hurtful and frustrating, these people aren’t necessarily bad. What they are is…human.

And what do we do every single day? We design products, services and experiences and much, much more for these humans.

By using the skills we have sitting right here in this room, we can help ensure that no one else has to experience what we’ve been through.

As people working in tech and gaming, we’re already crafting the future. We’re holding it in our hands. Everything is designed. There’s no reason why we can’t use our human designing powers for good and make that future an inclusive one.

We have the power to design that future where it’s safe and ok for people who are different to be themselves.

It’s not exactly rocket science but it’s not going to be easy and we’ve got a long way to go.

Challenge accepted.

Thank you.